The Institute of Medicine (IOM), Washington commenced a study of care for children who die and their families in 2000, and issued a report in July 2002.
The IOM appointed a committee of experts to oversee the study. The committee held five meetings, including three public sessions. Committee members heard testimony from:
- Family support and advocacy organizations.
- Health care groups.
- Parents of children who had died or were facing life-threatening medical problems.
The project was part of the Robert Wood Johnson Foundation's (RWJF) national program Targeted End-of-Life Projects Initiative.
Key Findings: The IOM's report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, included the following findings:
- The death of a child has a devastating and enduring impact.
- Children with fatal or potentially fatal conditions and their families often fail to receive competent, compassionate and consistent care that meets their physical, emotional and spiritual needs.
- Current methods of organizing and financing palliative, end-of-life and bereavement care complicate the provision and coordination of services.
- Inadequate data and scientific knowledge impede efforts to deliver effective care, educate professionals to provide such care and design supportive public policies.
- Integrating effective palliative care from the time a child's life-threatening medical problem is diagnosed will improve care for children who survive as well as children who die—and will help the families of all these children.
Recommendations: The report presented the recommendations of the study committee, including:
- Develop collaborative guidelines and protocols for pediatric palliative care as a basis for assigning responsibility and evaluating and improving performance.
- Develop regional support services for families and professionals in small communities without specialized palliative care.
- Include hospice care for children in public and private health plans, eliminate hospice coverage requirements for a prognosis of six months to live and reduce restrictions on palliative care benefits, including consultations and parent counseling.
Targeted End-of-Life Projects Initiative Projects - Strategy 3
Individual project results from the RWJF Targeted End-of-Life Projects Initiative, strategy 3: To engage the public and professionals in efforts to improve end-of-life care.Read the Program Results for Targeted End-of-Life Projects Initiative
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